In a heartbreaking turn of events, a mother is desperately seeking financial assistance to save her teenage son, claiming that leading children's hospitals in the UK have essentially "left him to die." Kelly Harris, 36, is urgently trying to raise £200,000 for life-saving surgery in the United States, alleging that Great Ormond Street Hospital (GOSH) significantly worsened her son Harley's rare spinal condition after a previous operation.

Harley Harris, a 15-year-old, suffers from an incredibly rare genetic disorder known as Spondylocarpotarsal Synostosis. This condition, with only about 25 known cases worldwide, profoundly affects bone development throughout the body. While babies born with this disorder may appear normal initially, their spines progressively fuse and bend as they grow, leading to severe curvature, shortness, hunching, and a host of related issues like scoliosis and lordosis.

According to Kelly, despite years of raising concerns about Harley's development, the severity of his condition was not fully addressed in a timely manner. She recounts instances where Harley missed developmental milestones, such as sitting up or playing with toys, and how her concerns were documented in medical records from birth.

In 2018, GOSH performed an anterior spinal fusion on Harley, aiming to prevent his spine from compressing his internal organs. However, instead of using metal rods, the surgeons reportedly fused bone from his ribs to his spine, a decision that Kelly believes had devastating consequences.

Kelly describes the fused spine as being "like concrete," asserting that the operation ultimately "destroyed" her son and is now "literally killing" him. She points to other individuals with the same condition, one in Belgium and another in Mexico, who are living relatively normal lives thanks to different treatment approaches, such as the use of metal rods to straighten the spine.

As a result of the procedure, Harley's condition has deteriorated significantly. His right lung has collapsed, his aorta is enlarged, and his lung function has plummeted to a mere 27 percent. He now requires daily oxygen and struggles to perform basic activities such as walking, washing, or even sitting up without experiencing excruciating pain.

Adding to the family's distress, Evelina London Children's Hospital has allegedly deemed Harley "too weak to survive" another operation to correct his condition. Kelly claims that the hospital took nine months to reach this conclusion, during which time Harley was left to suffer without adequate pain management.

Kelly expresses her anguish, stating that Harley was left to suffer for nine months without proper pain relief. She further alleges that doctors have described his case as one of the worst instances of respiratory failure they have ever encountered.

In a parallel development, GOSH is facing scrutiny over the actions of a consultant orthopaedic surgeon, Yaser Jabbar, who is under investigation for allegedly performing "botched and unnecessary operations" on 721 children, leaving some with lifelong injuries and deformities.

Among the alleged victims are a four-month-old baby and another child who may face limb amputation. The investigation has reportedly found that 22 children suffered harm, with 13 cases classified as "severe harm." Other patients have been left with legs of unequal lengths, chronic pain, and permanent deformities.

The concerns surrounding Jabbar relate to limb reconstruction surgeries involving the use of an Ilizarov frame, a metal apparatus invented by a Soviet physician that is attached to a child's leg with screws and gradually stretched to lengthen bones. Jabbar no longer works at GOSH, having resigned in September 2023, and has relinquished his medical license in the UK.

GOSH has acknowledged the concerns and stated that it is committed to improving its culture and practices, ensuring that staff feel empowered to speak out. The hospital emphasized its commitment to learning from the findings of reviews conducted when culture and performance fall short of expectations.

Amidst this backdrop, Kelly Harris is pinning her hopes on Dr. Lawrence Lenke, a renowned surgeon at Shriners Hospital in the United States, who specializes in complex vertebral column resections to straighten severely curved spines. This procedure involves removing small triangles from the spine to restore normal back movement.

However, the surgery comes with a hefty price tag of £200,000, a sum that the family cannot afford. They have launched a fundraising appeal to cover the costs, but so far, only a small fraction of the required amount has been raised. Kelly fears that if she doesn't try, she will lose her son, who spends his days confined to bed in agonizing pain.

Adding to the family's challenges, Kelly alleges that Evelina London Children's Hospital is withholding Harley's MRI scans, X-rays, and test results, which are crucial for Dr. Lenke to assess his case and determine the best course of action. She believes that this delay is jeopardizing Harley's chance of survival.

Kelly pleads for the hospital to release the documents, emphasizing the urgency of the situation. She claims that the hospital has been unresponsive and slow in providing the necessary information, despite the fact that Dr. Lenke and his team are eager to help but cannot proceed without Harley's medical records.

The family's struggles are compounded by the fact that Harley's father, Ben Harris, 40, who is also his full-time carer, was recently rushed to hospital with suspected heart problems, possibly triggered by the immense stress of the situation. Harley's two younger brothers also have additional needs, and the local council is building an emergency extension to their home so that Harley can live downstairs, as he is unable to climb stairs.

In a desperate plea, Kelly expresses her fear of losing Harley and vows to continue fighting for his life. She implores the hospital to release the necessary documents so that he can receive the treatment he desperately needs.

In response to the allegations, a spokesperson for Evelina London Children's Hospital stated that their clinical teams have discussed Harley's treatment options with a wide range of medical specialists, including experts from other UK centers, and that decisions about his care have been made after carefully weighing the risks and benefits of available options. The hospital asserts that it is continuing to support and care for Harley and his family.

Similarly, a spokesperson for Great Ormond Street Hospital for Children expressed regret that Harley is unwell and that his family is unhappy with the care he received. The hospital stated that it has been in contact with the family to address their concerns and welcomes continued engagement.

This case highlights the complexities and challenges faced by families dealing with rare and severe medical conditions, the importance of timely and appropriate medical intervention, and the potential consequences of alleged medical negligence. It also underscores the need for greater access to specialized medical expertise and financial resources to ensure that all children have the opportunity to live healthy and fulfilling lives.